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Delivering Autism Services to the World's Underserved Communities

The world's autism researchers celebrate a year of unprecedented progress made possible by Autism Speaks funding and resources

Posted by Autism Speaks Director of Public Health Research Michael Rosanoff, Associate Director of Dissemination Science Kara Reagon and Assistant Director of Education Research Lucia Murillo. Along with Senior Vice President for Scientific Affairs Andy Shih, they lead Autism Speaks Global Autism Public Health Initiative (GAPH).

For years, Autism Speaks has been a leader in an area of science that emphasizes turning research into tangible services for the autism community around the world. Autism Speaks mission is to change the future for all who struggle with autism. To accomplish our mission, we must ensure that scientific research serves families in need today.

On arriving back from the 2015 International Meeting for Autism Research, earlier this month, we’re pleased to report that this year’s IMFAR program featured a notable shift in this direction. Time and again, we saw the emphasis on what we call “implementation science.” This came with a loud and clear call to “get the science into the community” in meaningful ways.

In 2012, we funded a special round of GAPH research grants designed to take evidence-based autism intervention strategies and adapt them for use in low-resource settings around the world. We already knew the importance and effectiveness of early behavioral intervention. Our challenge was to find ways to provide early intervention services in places where trained professionals are in short supply.

This round of studies involved a broad range of underserved communities, with sites in Albania, Ethiopia, India, Pakistan and Taiwan, as well as rural Colorado.

Fast forward three years and these projects have reached or are nearing their completion. So Autism Speaks took the opportunity to highlight their findings at a special GAPH reception at IMFAR.

In his opening remarks, Canadian Member of Parliament for Edmonton Mike Lake emphasized the need to increase autism awareness and services in low- and middle-income countries. MP Lake has a son on the autism spectrum. “I want every kid around the world to have the same opportunities,” he tweeted from the reception.

Francesca Happe, president of the International Society for Autism Research (INSAR) thanked Andy and the entire Autism Speaks team for their worldwide efforts to increase awareness, decrease stigma and promote meaningful change for individuals affected by autism.

Read Dr. Happes personal message to the Autism Speaks community here.

The night’s scientific program featured presentations by the principal investigators of the GAPH grants. Jonathan Green reviewed the positive results from his team’s Parent-mediated Intervention for ASD in South Asia (PASS). Implemented in India and Pakistan, this involved building autism service capacity through a “task-shifting” approach. In this approach, skilled specialists train community health workers, teachers and parents, with the goal of bringing autism services to more families. It was just this approach that recently earned Autism Speaks GAPH grantee and PASS project researcher Vikram Patel a spot on Time magazine’s 100 Most Influential People list.

Read more about Dr. Patel and this honor here.

Rosa Hoekstra updated us on her Health and Education Training (HEAT+) project in rural Ethiopia. The program includes mental health training with an emphasis on intellectual disability, developmental disabilities and autism. It aims to decrease stigma and increase the identification of autism in a community by training health education workers to assess and manage childhood developmental problems including autism. This free training has already begun with around 1,000 health education workers in Ethiopia and will soon extend to up to 33,000 more.

Read more about Dr. Hoekstras Autism Speaks research grant here.

Li-Ching Lee presented results from a research project titled “Parent-Implemented Autism Intervention among Underserved Families in Southern Taiwan.” The study showed that a culturally adapted version of Pivotal Response Training (PRT) enabled parents and healthcare providers to improve behavior and communication skills in children with autism.

Read more about Dr. Lees Autism Speaks research grant here.

Deborah Fein provided an overview of our project to translate and test the Modified Checklist for Autism in Toddlers – Revised (MCHAT-R) into Albanian. As Albania works to develop greater autism awareness, it’s important for healthcare providers to have an effective screening tool in their native language. In this way, we can help ensure that autism is accurately diagnosed and appropriated treated. As part of their project, her team is also developing and testing a video-based program that will provide parenting strategies that can be used at home to support children with autism.

Read more about Dr. Feins Autism Speaks research grant here.

Susan Hepburn reported on her research project – aimed at helping teachers screen for autism in rural Colorado communities. Rural school districts participating in her research tested an online distance learning program that helped teachers screen for autism. The teachers also had access to specialists for consultations conducted through a video conferencing system. The effectiveness of this model was marked by the increase in students who were identified and receiving appropriate services.

Read more about Dr. Hepburns Autism Speaks research grant here.

Our global outreach efforts extend well beyond our GAPH research grants. This year, our global partnerships have into nearly 70 countries. In each, we have forged partnerships that go beyond autism awareness to turn awareness into action, creating services for those in need.

In addition to our GAPH grants, Autism Speaks is supporting two major global initiatives. Launched in 2014, these were presented for the first time to the IMFAR community at the GAPH reception.

UCLA’s Stephanie Shire described the first initiative – a collaboration between Autism Speaks and the World Health Organization to design, implement and evaluate a Parent Skills Training Program for non-specialists in the world’s low resource communities. The training program is heading into its field trial stage in more than a dozen countries. Our shared goal is to make it freely available to all.

To learn more, see
Autism Speaks and WHO Train Master Parent-Skills Trainers.

McGill University’s Mayada Elsabbagh introduced the second global initiative – led by Autism Speaks in collaboration with INSAR and WHO – to develop an open-source screening and diagnostic method that can be used in low-resource communities. This is vitally important because the gold-standard autism assessment checklists currently in use in developed nations have high royalty costs. In addition, they are designed to be administered by highly trained specialists.

To learn more, see
Identifying Autism in Disadvantaged Regions: Challenges and Opportunities.

Reflecting back on the conference, it’s clear that finding ways to provide effective community services is a top priority for the international autism research community.

Autism Speaks’ investment in implementation science and community-based participatory research is paying dividends for families and researchers. It’s giving us the knowledge and tools we need to change the future for our children and families in the world’s diverse communities.

We’re thrilled by this growing interest and momentum toward family-centric services and research. We look forward to working with INSAR and other stakeholders to support continued scientific discovery, programs and policies that benefit the global autism community.

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The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.